Marian Aiken

Alan and Donald returned home as a ‘temporary placement’ from a wonderful care home where they had lived for many years. Temporary for Donald meant a bit shorter time than it did for Alan. Finally, after 8 years of ‘temporarily’ living with the family, an opening was available and we decided to take the opportunity for Alan to move into a care home. The best part, it is the same home where Donald lives and they are together again and even share a large bedroom. 

Alan and his brother Donald in the living room of his new residence

Alan and I have struggled together over the years. He had strongly bonded with his dad when I came into the picture. Therefore, for many years I sat along the sidelines while his dad was the primary caregiver. Things changed. His dad and I separated and Alan began to spend weekdays with me and weekends with his dad. Finally, Alan and I had the opportunity to actually get to know each other better and form a stronger bond. Parenting expectations and caregiver styles were different between his dad and me. There was a good deal of adjustment for Alan to make but he is bright and was capable of doing so. After living in a group home for several years, Alan moved back home with me fulltime but still with the goal of finding another place to live. One day an email came in from his social worker informing me of an opening in a care home and asking if I would consider Alan moving there. The strange thing is that Alan knew about this before I had any information and he seemed ready to go.

Alan’s last morning at home before moving to his new residence

Alan loading into the bus – happy to be moving on

We didn’t have a whole lot of time to prepare for this move to claim the opening at the care home. Alan is not a person you can just say to someone – “Here he is. Good luck.” Wipe your hands off and leave. There is a great deal to explain about his care since his needs are close to the maximum of what most individuals with severe physical challenges require. I spent a lot of time recording things – how to prepare his food, how to lift, how to put him in his wheelchair, how to feed him solids and give him liquids, how to give him his medications, and the list goes on. I printed this out and passed it along to his new caregivers. Some staff from the care home came to the house where I could actually demonstrate all of the above. Someone videoed it on their phone to share with other staff who were not able to come here for this beginning training session. When moving day came, I have to admit I was feeling nervous but also excited for Alan.

Things seemed to be going well from information I had received from staff but all too soon another email came in saying he had been taken to the emergency room and admitted to the hospital. WHAT? How could that be? The first thing I wanted to do was drive there and see what was going on but I was tied up at the house with other sons and I also wanted to avoid going to medical facilities and being exposed to the flu during this bad flu season. So, emails and text messages began to go back and forth between the care home staff and myself and I managed to avoid stepping into the hospital and the primary care physician’s appointment. 

I felt as if I had let Alan down and was upset with the staff for these problems. How could all of this happen since the last 30+ years of Alan’s life the only time he had been hospitalized was for orthopedic surgery, if I remembered correctly?  At any rate, he healed, was discharged, and went back to the care home and his day program.

Too soon another email came that he had once again been taken to the emergency room and admitted to another hospital for a different problem. Twice in less than four months after moving out. My heart sank and I felt so helpless for a while. However, I did not avoid the hospital this time but went to check on him, to speak with medical staff, and advocate for his needs. I also alerted the medical team Alan’s desires for his care that were written in his Advance Health Care Directive.  I asked the care home to bring his wheelchair into the hospital so I could get him off the bed and show them the proper positioning to feed Alan. Things improved quickly and he was discharged back to the care home.

Alan wanted to come back to the house. I understood his fears but I also encouraged him to give it another try. I had the opportunity to speak with the owner of the care home with Alan present. I felt better after our discussion and hopefully changes can be made to make the situation better for everyone. I learned there were some significant changes made in Alan’s diet, many foods that Alan requested but not foods he frequently consumed when living with his family, could have caused some of the problems of the first hospitalization. The issues concerning the second hospitalization are still not clear but appear to be related to how Alan is being fed.  Someone will need to go to the day program and review feeding techniques with the staff. 

As a parent, I sometimes forget that things I do naturally and in a routine way are not something others would do. I shouldn’t expect others to step in and do things the way I would do. I can give suggestions on how to position someone on his bed, for example, but not to expect there will be follow through in the exact same way I do. Most of how I care for my sons developed through trial and error until a solution was found that was the best for each of us. This is not something that happens overnight and honestly I completely had forgotten how long it takes to learn about each individual. 

On top of this, I learned that Alan cried every time my name was mentioned (I was not aware of this) and was stressed. This could have contributed to the medical emergencies. There was another big change about this same time and that was beginning a new day program. Although things were reviewed with some staff, perhaps it was too much information to process at one time, or different staff members are assigned to assist Alan daily. 

As I write this, there have not been any more medical emergencies and I pray there will not be more. 

Alan waiting for his ride to the day program

After the day program Alan is dropped off at his new residence

Trying to provide, understand and accept varying degrees of respect and dignity for my sons has been a struggle for many years. Recently this concept has become more challenging for me.  Am I old school? Burnt out? Has my expectations of others changed over the years? Whatever the reason, I am having a difficult time.

Let me explain a bit about what is happening. As you all know budgets and support systems for those living with physical challenges has become extremely limited. I spent more than a year and a half advocating for two of my sons. I made phone calls, wrote emails, filed appeals, and even went before a judge to request appropriate quality (not cheap, flimsy) wheelchairs. Chairs with specialized seating systems, with specific foams, upholstery, and supports to meet their personal needs. I am happy to say the judge sided with us and both of my sons were able to get their new seating systems. One of them received a much needed new wheelchair from a vendor with years of service and knowledge with seating systems.

I am sure I have mentioned before that because of the severity of the physical challenges my sons have they can’t sit in something plain and simple. Seats need to be of specific measurements and designs to accommodate their unique bodies and allow them to sit upright as much as possible with special trunk supports, headrests, and seat depth (especially when one leg is longer than the other or hips are out of socket).  Many hours and trips back and forth to the supplier happen before the chair can leave the vendor and be taken home to be used. These manual wheelchairs are not cheap and the price tag can easily be $15,000 give or take a couple thousand dollars and even another $10,000 more if the user needs a power wheelchair. 

Vomit on wheelchair

After all my advocating and feeling successful, this week I about lost it when one of my sons came home from his program with what appeared to be vomit on one side of his new chair. It wasn’t even his vomit but that of another client’s. It appeared that no staff had made any effort to clean up this mess.  Instead of taking this son for a blood draw that was scheduled, I spent the time cleaning the chair where the mess was into the seat, seatbelt, tilt track, front axle, tires, and armrest. I was shocked that the paratransit company would even transport him home from the program with this mess. May I ask, what has happened to respect and the need to take care of specialized equipment? 

About one month after the new chair arrived, I had to remove the foam back section to clean up food that was behind it and down into the back of the chair seat. This food was not the type of food I had fed my son at home. So, once again, why don’t people show some respect and clean up the messes that they have made? 

Another area that has been eating at me is the way some of my sons arrive home and I find the poor quality of care they have received in the bathroom. One son had been coming home with the waistband of his underwear rolled and bunched under his tailbone and not pulled up correctly. How uncomfortable! He has become passive and doesn’t mention this to staff. When discussing this with him and sharing my thoughts that this is not acceptable care, my son stares at me blankly as if I am speaking a foreign language. Previously he would have asked staff to correct the problem. Has he lost respect for himself to not even say something? I am bothered that he must be uncomfortable because of careless caregivers.

Another son who uses diapers arrives home with some really unbelievable stories – diapers sticking outside of his pants for all to see, penis not even in the diaper (guess where all the urine goes). Diapers on inside out, or the other day with the back waist below his tailbone and the elastic leg opening up his crack. Insane!

Another area that annoys me to the point of anger is those large sick-looking pinkish chux sticking out everywhere on the seat of the wheelchairs. I understand it is wise to use them to help protect the upholstery but why can’t they be folded neatly and still give protection to the chair from toileting accidents? I would also like to suggest that caregivers place soiled garments in plastic bags in the physically-challenged person’s backpack and not tied on the handles of the wheelchairs for all to see. Another thing is to place urinals in the backpacks and not sticking up in full view. In my opinion this is equivalent to a person like myself walking around with a toilet on my back to show I use a toilet to eliminate human waste. I could go on and on with stories about this topic and I am sure some of my readers have some terrific stories to share as well. 

I have always taken great care when dressing my physically-challenged sons to make sure their undergarments were on correctly, comfortably, and not showing for the world to view. I have always wanted my sons to be accepted in public. For some, their appearance from the severity of their physical disability makes it a greater challenge to be accepted even without being dressed in a disheveled manner. I have some sons who chose to dress in ways I don’t care for and that is their choice. However, for those who cannot make these decisions or help themselves with their care, it is my responsibility and the responsibility of other caregivers to be sure they are dressed comfortably and appropriately. For me, I would rather take a few more minutes to dress my sons appropriately, to take care of their wheelchairs and help them look presentable in public. It drains me emotionally to see so little regard given by others in this area of care and I pray that one day when I am feeble and need assistance, those who assist me will allow me to keep my dignity when I am in public and not advertise to everyone that I am now in diapers.

Soiled garments on back of chair

Urinal for all to see

Rusty before he became sick

Parenting may be one of the most emotional experiences in life. At least it has been in my life and this week found me focused on Rusty. I have written elsewhere (Chapter 12 in my book DEREK) about Rusty’s medical struggles shortly after he came into my life. Regardless of his medical challenges, behavioral issues, and extremely low intellectual level, Rusty and I bonded. He has always held a special place in my heart.

There have been some hospitalizations over the past several years and this week another medical challenge came to the front – Rusty was taken to the hospital with pneumonia. He was not able to or had no desire to take nutrition by mouth. My first reaction was to jump in the car and head to the hospital as flashbacks of previous life-threatening allergies to medications came to mind.

Several years ago I had decided to place Rusty in a care home, partly with the hope to save my marriage and also to allow me more time to care for my younger and more medically-fragile sons. The placement did not save the marriage but did give me more time for my other sons and the house calmed a bit without his constant banging and screeching behaviors. However, I felt deeply guilty making this decision. Even though he was a young adult at the time of placement, many of my sons still at home were older than he. Yet, I made the decision to move Rusty. I felt like such a failure not to continue with his care because years earlier I had determined he was ‘here to stay.’ Although social workers and doctors had predicted we would only be able to manage five years, Rusty did stay for more than fifteen.

The care home where Rusty, and also Sean, reside is home to six adult men with various degrees of challenges. The house is kept neat and two residents share each bedroom. The rooms are much smaller than our home and the bathroom is not nearly as accessible as ours but they make it work. The men are showered more often than here at our house because of the number of staff available to provide care for the residents. I used to joke that if they kept Rusty so clean he wouldn’t know who he was. Regardless of how often I bathed him, he was always dirty from spending hours on the floor moving around and playing. In fact, I was greatly upset because the pleasure of being mobile as such would pretty much end once he moved to the care home with different rules and conditions to meet licensing requirements. Also, all the clients have very short hair, unlike our household where each has his own hairstyle, beard and/or mustache to express their individual personality.

Even after all these years I find it difficult and emotionally upsetting to not visit my sons more often. To mention a few reasons why: communication difficulties, different methods of care, cultural differences, and my own desire to be an ongoing mom and caregiver when I need to let go. I really have a hard time understanding the speech of most staff members in the three different care homes where five of my sons live. I become frustrated and then tend to shut down mentally. I am sure this gives the staff a strange impression of who I really am.

I also have my set ways of caring for my sons and it has been difficult to watch others take over and do many things in different ways (not that what and how they are doing it is wrong) and I try to hold my tongue and not become upset. After all, these are my sons who I have taken care of for so many years. I love them and feel I know them best ~ isn’t this true of most parents? I know what TV programs they like to watch, foods they especially like, music they like to listen to, and the list could go on. At any rate, Rusty was not physically under my care the week he was taken to the hospital. The care home staff immediately notified me and my heart skipped a beat or two as I read the text message.

Photo of Rusty sent to Marian from the hospital

No one really knows what happened. However, when a staff member noticed that he was unresponsive for a few seconds, there was concern. Perhaps he had a seizure? He soon became aware of his surroundings but he was pale and extremely weak and was immediately taken to a hospital.

I found time to go check on Rusty over the weekend. The doctor on call came to speak with me but it was close to impossible for me to understand her speech. Of course there was no ASL interpreter at this specific hospital but I got the idea of what was being recommended for his care. The hardest thing was to get them to understand that I am his conservator even though I had papers with me. I also had his Advance Health Care Directive, but the doctor wasn’t interested in that. I was frustrated and told her I would be back on Monday to follow up with everyone then.

Monday found me back at the hospital struggling to understand what was being said, especially by the two nurses who refused to remove their facemasks for me to speechread. (I need to order some of these new masks that are partially clear to allow me to see people’s mouths and pass them out if needed). They supposedly tried to find an ASL interpreter but couldn’t. Several people were in the room at the same time or in and out: care home staff, one or two nurses from the hospital, his doctor, a new worker from Good Shepherd Fund, a nurse from San Andreas Regional Center, and a speech therapist making suggestions about what should be done, how things should be done, and what changes need to be made. Too much!

Rusty staring blankly into space

During all of this, Rusty was pretty much just staring around with no facial expression, pulling off his nasal cannula and not happy with his IV. At times he appeared to be cramped and wanting to change position but really couldn’t move much because his right arm was restrained to keep him from pulling out the IV. The care home staff and I helped him scoot up in the bed a bit but no hospital staff made an effort to move him the entire time I was there, which was most of the day. The Regional Center nurse and I had a serious conversation. Between the two of us we completed a POLST form for the doctor to sign. All the time as I was speaking with people, these thoughts kept going through my mind: ‘Give me wisdom, give me courage for the facing of this time as I make decisions on Rusty’s behalf.’ I placed a kiss on his forehead, as I needed to leave and go home to care for some of my other sons.

After all my frustration of communicating with the medical staff I was relieved they finally listened to what I had asked – finish the antibiotic via IV and remove the IV. He was discharged to the care home the following afternoon and I am so thankful the care home  would even consider taking him back (although I was mentally making a decision to bring him with me if needed). I suggested that the care home slowly begin feeding him orally but modify the diet and make the food soft to start with, give him foods he especially likes to begin, regardless of their nutritional value. My goal was simply to have him begin eating again. I guess I should mention that the day Rusty was taken to the hospital he was eating regular foods, chewing, feeding himself, and this is the reason I stuck with the decisions I had made.

The next day I was asked to go to the care home to sign some papers for a home health nurse. She arrived 45 minutes late and I was feeling antsy. This nurse had never met Rusty or me. The first thing she stated in the conversation was that Rusty needed a feeding tube. I mean, how do people draw these conclusions before ever meeting the patient or family? I struggled to remain polite as I said it was not my intention for Rusty to have a feeding tube. I made a few suggestions to a care home staff as I watched him feed Rusty soft foods and it was also obvious that the headrest on his wheelchair needed to be adjusted to allow him better positioning for swallowing. A couple days after he returned to the care home, Rusty was eating solid foods cut in small bites to make it easier for chewing and swallowing.

Have I left some of my readers with questions about why I struggle with my feelings about placing Rusty in a care home? Let me explain a bit and know that I am grateful he has a place to live and people to care for him. Rusty and I have been through so many life-threatening medical problems that it is hard for me to trust what others will do. Most likely if I had not been involved with the decisions this past week he would have had a feeding tube when he left the hospital. Can you imagine how I would feel if permission was given for surgery last week to have a feeding tube knowing that he is now eating again? That would have left me broken-hearted and he would have been deprived of one thing he enjoys, eating.

Another reason I struggle with out-of-home placement is his inability to communicate at a level my other sons can. All those who are in care homes can at least make their needs known to others at a much higher level than Rusty. They all have developed consistent YES/NO responses and can use icons or modified signs or speech to communicate. Rusty is at an entirely different level and I become upset thinking someone will not be able to read his body language to understand him or to meet his needs. I struggle emotionally on his birthday. I can send a card but really he would not have any idea who it was from even if care home staff mentioned it was from me. My other sons can understand that level of communication. I need to come to terms with these feelings. I’ve been dwelling on them long enough.

I understand the outcome of medical challenges may not always be like this past week. However, my thoughts of ‘Give me wisdom, give me courage for the facing of this time as I make decisions on Rusty’s behalf’ were answered.

Follow-up: Two weeks after his discharge from the hospital Rusty and Sean’s care home took a trip to Lake Tahoe.

Rusty at Lake Tahoe

Rusty and Sean enjoying the day at Lake Tahoe